Trach

I feel the same way McBlonde .

I had read in the past there was a difference in the quality of midodrine depending on the manufacturer. Is Global still considered the best quality manufacturer? I took midodrine first then switched to ProAmatine (non-generic form not manufactured anymore) and experienced less side effects until migraines finally got me.

Ok thanks I remember that one.

Jangle, what test did you have that indicated your vagus nerve was dysfunctional?

My fine motor skills/ataxia comes and goes with me and my two girls (oldest just has severe migraines not POTS). Besides lack of sleep, stress, and increase in pain, I have not been able to tie any other triggers. I know this sounds horrible but although my kids are excellent students, any school project that involves coloring (ie geography) is always horrible for them - so I finally started helping with the coloring as long as they did the bulk of the work first. Neither of my kids can go into the medical field because of their tremors. My oldest daughter's doctor said her tremors were due to Effexor, but my younger daughter's doc said it was neurological. (btw we all take effexor). Go figure!

Thank you Issie!

Here is a link on oxidative stress http://www.drweil.com/drw/u/QAA400537/Stumped-by-Oxidative-Stress.html

Issie - I am in the process of being referred to a rheumatologist and also have an appointment with a geneticist who specializes in EDS and vascular diseases- elevated homocysteine levels (a family mutation I need to be tested for). Is that overkill? Jangle & Rama - during my testing, my vagus nerve was found to be functioning ok. The test was based on blowing into a tube. I was surprised I passed because usually I almost pass out or get a massive headache whenever I blow up a balloon, but I actually felt good the day of the test. So if a persons vagus nerve is functioning, the less likely angiotensen II levels will be elevated?

Issue thank-you for your explanation and inspiration. I will keep reading! What type of doctor performs the test? I have learned a lot from reading all of the posts. I had never considered that I could have EDS until joining this site, but now I realize I need to be evaluated.

I have a good friend of mine whose daughter had a PICC line for a year prior to seeing Dr. Grubb. Thankfully they did not have any complications with the line. Dr. Grubb told them that frequent use of iv saline was only used as a last line of defense, because eventually our bodies adjust to the iv treatment which then makes iv saline not as effective. So now my friend's child does get iv fluids, but on a periodic basis.

Hydrate as much as possible

So since I have a higher than normal body mass index I would not fit in this category? I am confused because my POTS (and my daughters) was described to me as a possible dysfunction of the brain stem or something around that area of the brain. We definitely have a genetic component. Thank-you for your reply. I appreciate your help.

I was instructed to start out doing all of my exercising sitting down. I have a rowing machine (ordered used on amazon - not expensive) that seems to work easier for me than the recumbent bicycle . When I cannot get out of bed, the PT told me to try to bring my legs alternating forwards and backwards (feet flat on mattress) as many times as possible per day. The PT also told me to do this in the bath tub. I was also supposed to work on my core muscles with an exercise ball but I opted for the rower.

I hope it helps. If i remember correctly, the person who wrote the post, tmackinn, was in the middle of medical school when POTS hit . Her posts were always insightful and helpful - like Rama.

Thank-you for the thread. Great explanation! I always thought it was because i was putting my heart below my head, but the other explanation makes more sense. Bending over used to be a huge migraine trigger for me, but now I just get the pressure and then dizziness nausea. Go figure.

I read this post last year on another site (dysautonomiaconnection) thought it may be helpful... Re: Having recurring chest pain, ( NEW INFO ) by tmackinn » Fri Jan 14, 2011 2:38 am So sorry to hear you are having such a terrible time. I hope you can find some relief soon. I often have bad chest pain. Sometimes it is so bad, I grab my chest and double over. I, too, get pain down my left arm, up my neck to my face and into a severe migraine. I have LOTS of EKGs done, all of which are relatively normal. I have been given nitroglycerin which does get rid of my chest pain. I have not experienced bad tachycardia with nitro. My POTS is not associated with low BP. I usually have high BP. Do you get low BP with your POTS? If so, the below explanation of how nitro works might explain your tachy reaction Perhaps some useful insight: Nitroglycerin is a nitrate. Nitrates are converted to nitric oxide. Nitric oxide causes vasodilation of blood vessels (aka, it lowers blood pressure). So, if you experience low BP with your POTS, I hypothesize that when you take nitro and your BP drops through the floor, it will trigger a POTS episode including tachycardia. So why does it relieve your chest pain? Because the cause of your chest pain may be either spasms of your cardiac blood vessels or a decrease of blood flow to your heart. Nitro will open up your coronary arteries (the arteries which supply your heart muscle with blood). Once adequate blood flow nourishes your heart muscle with oxygen, your chest pain will most likely cease. My cardiologist has told me numerous times POTS patients often have spasms of their coronary arteries or a decrease of blood to the heart muscle. Why? No one knows; however, it is hypothesized the the blood is mis-distributed like it is in other parts of the body. The spasms or mis-distribution of blood to the heart is not detrimental (i.e., it will not cause damage to the heart) and will not show up on the normal cardio work-up. The things I do to help with chest pain include lying completely flat, drinking fluids and consuming potassium (either in tablet form or drinking some V8 which has a good dose of bother sodium and potassium). Some of my worst chest pain has been associated with low potassium levels. So, when I feel the onslaught of a bad chest pain attack coming, I try to make sure I up my potassium (and magnesium) consumption. (Research shows that for an unknown reason, when potassium levels are low, magnesium is often low too. Potassium needs magnesium and magnesium needs potassium for proper absorption and utilization by your body.) I still develop chest pain, but it often is not as severe. I hope you have some relief soon from the chest pain.

Ok, maybe it's the brain fog or just pure ignorance, but I have read the studies on angiotensin II and then the basics but my background is in finance and accounting and I am lost. Would someone please give me a basic explanation about angiotensin II? How does it affect vasoconstriction? How does it relate to ADH levels? I am sooo..... Confused. How did it affect pregnancy complications? Does it have anything to do with blood clotting?

I live in the pinewoods of East Texas....moved here kicking and screaming but like it now. Was raised mostly in Dallas and San Antonio but also lived in Amarillo, Tx, Tulsa, Ok. and Muskogee, Ok. ( yes I am an "okie from Muskogee" but only lived there for 18 months). I definitely believe some sort of environmental factor may have affected my family because my third sister and I have significantly more health issues/ autoimmune problems than our older two siblings who did not grow up in Texas (they were in college by the time we moved to Texas).

Getting progressively worse but hope and faith I will get better someday. I witnessed my daughter go through **** and back so I believe recovery is possible.

I had never had a problem with GERD until my POTS started flaring. It seems like my stomach problems were the last to be effected. Is that normal for some people? I do remember telling my doctor several years ago that my headaches had changed. I was starting to have a lot more nausea than ever before. Now I know my nausea was from POTS. Since this part is so new to me, I don't understand how I can eat at night and feel like my food is still in my esophagus a few hours later. I barely have an appetite during the day (which is good I need to lose some weight) but I am finally hungry at night. Then I get in trouble by eating too late. Agrrr.... So frustrating!!

What would it mean if your body could not tolerate any type of hormone therapy?

I think the best thing you can do is get set up on home health for saline infusions. Much cheaper in the long run.

I recently found out why getting IV saline is so hard in the US when I was trying to get IV treatment for my 18 year old. I was told due to past Medicare fraud, only pediatricians can administer IV's in their offices. Prescriptions for IV saline for adult patients must now be administered through infusion centers, qualified "doc in the boxes", and hospitals. Since doctors do not make money on an iv saline prescription and insurance companies are frowning on the cost, doctors are more reluctant to prescribe IV saline treatment. So, what used to cost $50 in my pediatricians office cost over $500 at the "infusion center". But the chair was much nicer and there was a tv.

Your doctor should not have access to your prior medical records unless you sign a HIPPA release. However, if you sign a HIPPA release for one of your prior doctors and he/she already has all of your old medical records from previous doctors, then by default your new doctor will have your entire file. The only way I believe a doctor would have access to your medical file is if you see a doctor affiliated with the same medical institution. You may be able to limit what is transferred under HIPPA to just the test results. I have signed a few HIPPA transfers that have been very specific as to what to transfer, but not all. My daughter's doctor set up a service where every time we have an office visit or hospital visit, copies of the notes are sent to me. This was started after I had a run in with a different doctor one time over my daughter's care and was shocked to see how my personality (which had never been a problem in the 12 hospitalizations before) was written about into her hospital file. This doctor thought my daughter was making up the pain in her back (CT showed a disc protrusion). But because my daughter was saying pain was 9-10 but wasn't screaming bloody murder - the doc didn't believe her and believed I was being "manipulated" and recommended counseling. To add to insult, my husband had to cancel two days of work because the doctor (a woman) kept threatening to release our daughter even though she could barely walk. The doc only gave in after talking to my husband. Eventually the head of physical therapy said she would be in excruciating pain with the injury. The PT ordered a TENS unit and everything was fine. The doctor never apologized even when she was clearly wrong.

Jangle, You should not be treated like that at all. I am so very sorry. Doctors can be so ignorant and rude. I hope you will start finding a new one soon. Where do you live? Because I have problems traveling right now, I finally resorted to a telephone conference with a POTS doctor out of state, Dr. Blitshteyn. (this is after I had my autonomic testing completed and I had problems with the doctor) Dr. Blitshteyn reviewed my medical records, recommended various tests, and set up a well thought out treatment plan. I can call or email her with any questions. I chose Dr. Blitshteyn because she also has a strong background in both POTS and migraine treatment. Just an idea. Do not let him get you down.